b12 levels?

Hi there, don't know if this will be of any help to you. I don't actually know what my B12 levels are, as at my last blood test my doctor just told me I had loads of B12 and I could cut back my shots to once every 3 to 4 weeks. Yes, weeks! I still sometimes do them more often than this, depending on how I feel. I make sure I get a flu jab each year too, on the principle that every little helps.

I have had PA for about 3 years. After the initial \"loading\" period my GP recommended shots (which I do for myself) once a month. After about 3 months or so I felt this was not satisfactory. I started to feel very tired, really dragging, long befre the month was up. So, I started to do the injections more frequently. I discussed this with him and his feeling was, as I had no adverse effects from the shots that we could see, and that B12 excess is excreted so efficiently anyway, that I should carry on with the more frequent shots.

If it is any help to you, I am also hypothyroid (thyroxin 100 mg daily) which was diagnosed about 6 years after the birth of my son, who is 21 now. The PA and thyroid condition are probably linked.

I lead an extremely active life (sidelined through injury at present!) I am a freelance riding instructor, keep horses at home and am studying for a degree part-time as well.

My experience has been that I go by how I feel and, for example, if I know that I have a really heavy week coming up I might add in an extra B12 shot. Reviewing your posted experience, all I can tell you is that my GP put me on weekly loading doses of B12 when I was first diagnosed with this, just in case I had an adverse reaction. Those weekly doses continued for nearly four months.

I don't know how long you have been suffering with this but all I would say from my own experience is that it has probably taken about 2-2.5 years for me to feel really normal again, reasonably robust and resilient.

Until that period of time had passed I found that I got really tired very easily, a horrible tiredness that drags on for days, and picked up every infection going.

I don't know if I should say this, but you can buy B12 for intramuscular injection online. Pehaps your doctor would be open to you trying a regime of more frequent injections for a while? Certainly my experience has been that this is a condition you need to keep on top of and I suspect individual responses vary a great deal. What I mean is, \"normal\" is what is \"normal\" for you.

Hope this is of some help to you. I think I am pretty lucky, I've got a very open-minding GP-I don't think he'll let me do anything too silly but he does take on board how I am feeling and my blood tests have come back totally satisfactory for the past year or so. If I get tired then I revive with normal rest, rather than that awful fatigue that flattens you completely and makes it such a battle to just keep going. But, as I say, I keep on top of it (I can't afford to be physically or mentally incompetent with what I do, it would just be too dangerous) and I see my doctor if I am not happy with how I am feeling. That \"I'm just not right\" feeling. I want to be able to live my life doing a bit more than \"just keeping going\"!.

Sorry to go on endlessly but it might also help you to know that I was pretty bad with this before blood tests showed anything out of the ordinary. Not only was I a physical wreck but I was starting to get mentally confused as well, which was noticeable to others before I started to realise that something was wrong.

I suppose the point I am making is that it is perfectly possible to feel normal and fully functional with this (which seems to be an inherited thing in my case, linked to hypothyroidism) and, I don't know if you are male or female, but I am female and the insidious nature of this problem I think can get a bit \"brushed aside\" sometimes, or that is what I have been t

Hi M. Thanks for the advice. I am 45, female and newly diagnosed. My doctors attitude seems to be, do it by the book for everyone, instead of treating each person as an individual.

I am due my next b12 injection in a few days so if my fatigue suddenly disappears then I will know 3 months may be too long between jabs. At least I will have some ammunition if it happens again!

Not sure where you live but dont think self injecting is very common in UK.

Will let you know how I get on.

Thanks again.

Hi there Mitchb:

just seen youir reply (I don't log on that often!) and I live in the Republic of Ireland. Self-injecting isn't that popular here either, presumably because people don't like doing it, but most GPs give their patients the option. This might be because of the nature of health care here-a GP visit costs Euro 55 a time unless you have a medical card.

It isn't like a diabetic pen, as you use a standard syringe and needle into the lateral (outside upper) muscle of the thigh. Pinches a bit but you soon get used to it. Might be tricky if you have a needle phobia, though.

Don't know how severe the PA is with you but if you're only recently diagnosed it may take you quite a while to feel consistently normal. By this I mean that you'll be quite revived after your injection but the benefit may subside quickly and this could go on for many months, going by my own experience and that of others I've talked to.

As I understand it the body excretes what it doesn't need so I can't see any great harm in suggesting to your GP that you could have more frequent shots. Or (assuming he/she thinks you are a responsible person) giving you the equipment so that you can do them yourself for a few months at your own discretion.

Just a thought: if you are buying online, be sure that your supplies come from the US or Canada. I have discussed this with my pharmacist and his feeling is that those are the only places where you can be confident about what you are buying.

Something worth bearing in mind is that a lot of doctors still regard PA as a disease of the elderly, who obviously by and large don't have the activity levels, nutritional requirements etc. etc. of somebody in their forties. I am 44, by the way.

You are probably already taking various supplements but, if you are not, it might be worth trying to work out a supplementation program, bearing in mind that there are some things you should be careful about taking too much of.

Don't know what sort of relationship you have with your GP: I lived in London for 10 years and I do find that GP care here is a great deal more personal by comparison. I guess this is because the population is far smaller and it is easier to give each patient more time.

My own experience is that the onset of PA is very insidious, you deteriorate very slowly and don't really realise how unwell you are. So, it is really well worth persevering and nagging your GP (in the most tactful way) and do try to look after yourself as best you can diet- and lifestyle-wise because it really, really pays off.

Again, it may take a year or more before you start to really feel better, depending on how bad you'd got before being diagnosed. So don't lose heart!

If your PA is due to a lack of intrinsic factor there's not a lot you can do to help diet-wise, although I have spoken to two people whose mothers were diagnosed with it years ago when the shots weren't available and they lived long and productive lives by eating a quarter of a pound of raw liver each day. Whether you'd want to eat liver, raw or otherwise, depends on where you buy it from. I guess organic would be ok. Not a very attractive thought, I know!

Best of luck...

M

Hi M

Thanks for your reply. I too dont log on very often.

I have to say I am feeling better since my last injection which was nearly 4 weeks ago. I do seem to lack that extra energy I used to have, which worries me and frustrates me. After all 45 is not that old!

My Pa is not due to intrinsic factor, the cause has not been identified, something else that frustrates me. I have always been fit and healthy and this has brought me down to earth with a bump!

My mum has advised me to eat raw liver but nothing would persuade me to do that. Getting the correct combination of supplements could help but my GP seems to have washed his hands of me. He thinks that I have been diagnosed and had the correct treatment so I must be cured! They basically dont want to know, they will not even consider more frequent injections. Asking him to advise on supplements is not an option. What do you take? Have you any suggestions on who could advise me.

Thanks for your support, it does feel better to speak to someone who has the same worries.

Mitch